Summary

The Office of the Assistant Secretary for Planning and Evaluation (ASPE), in partnership with other agencies and divisions of the U.S. Department of Health and Human Services (HHS), coordinates a portfolio of projects that build data capacity for conducting patient-centered outcomes research (PCOR). PCOR focuses on producing scientific evidence on the effectiveness of prevention and treatment options to inform the health care decisions of patients, families, and health care providers, taking into consideration the preferences, values, and questions patients face when making health care choices. The data infrastructure includes data sources and functionalities that support the research. Major building blocks are the services, standards, policies, and governance that enable the use of the data.

ASPE asked the National Academies of Sciences, Engineering, and Medicine to appoint a consensus study committee to identify issues critical to the continued development of the data infrastructure for PCOR. The committee’s work will contribute to ASPE’s development of a strategic plan that will guide its work related to PCOR data capacity over the next decade.

As part of its information-gathering activities, the committee organized three workshops to collect input from stakeholders on the PCOR data infrastructure. This report, the first in a series of three interim reports, summarizes the discussion and committee conclusions from the first workshop, focused on looking ahead at data user needs over the next decade. The workshop included representatives of patient groups with a wide reach and researchers with broad research interests as well as an understanding of the

PCOR infrastructure. The high-level conclusions included in this interim report are based primarily on the input collected as part of the workshop, background documentation received from ASPE and other public sources, and the committee members’ synthesis and expert judgment regarding the input received. As an interim report based on one in a series of information-gathering activities, the scope of this report is narrowly focused on a subset of key topics relevant to the committee’s charge. The conclusions reached by the committee are, at this stage, fairly high level. After completing all of its information-gathering activities, which include but are not limited to the three workshops, the committee will also issue a final report, containing the study’s overall findings and conclusions.

FUNDAMENTAL DATA CHALLENGES

Most data that are available for PCOR are collected for clinical care, billing, or other nonresearch purposes. This presents a fundamental challenge to answering critical questions, but the workshop also made it clear that opportunities exist for making the data infrastructure more suitable for answering questions of interest, so long as the potential uses of the data are carefully considered.

Researchers experience barriers that limit their ability to access data available in databases, which range from databases that can be considered a part of the PCOR data infrastructure to those owned by private companies. A focus on facilitating and simplifying access could further enhance the usefulness of PCOR data.

DATA FRAGMENTATION

The data that exist for PCOR are collected and curated in a variety of databases across a fragmented health system. These databases are typically constructed as stand-alone entities for particular administrative or other

uses, and without factoring in potential linkages with other databases. The workshop identified these data silos as a major barrier, both to understanding the role of social determinants of health and to research more broadly. A focus on facilitating data linkages could greatly increase the usefulness of the information available.

HEALTH DISPARITIES

A theme that emerged from the workshop was the magnitude of the gaps in the data that are available to better understand and address health disparities. Health disparities represent an evolving and expanding area of research, with corresponding data needs. Limitations exist for a variety of social determinants of health data and for a range of populations. Improving the data available for understanding and addressing these disparities would require data strategies that prioritize this goal.

The workshop also made it clear that the data available do not capture complexities that are necessary to understand how people’s characteristics and experiences influence health outcomes. Speakers at the workshop identified several potential ways of capturing data that reflect these complexities, emphasizing the need to build flexibility into the data collection systems to allow them to adapt to evolving terminologies and technologies

for capturing and processing data. These considerations are particularly important for social determinants of health, an area that may be rapidly changing.

PATIENT DATA NEEDS AND ENGAGEMENT

Too often, the data available for PCOR are not focused on the issues that are truly important to patients and that would enable them to find answers to their questions about treatment options and potential outcomes. Information about the cost implications of medical care is an area in which data are particularly limited, because it has only recently been included in the statutory scope of PCOR.

Even for the many areas where data on patient-centered outcomes are available, the information is rarely available in ways that would make it truly accessible to patients for decision-making purposes. More widespread dissemination of information that is easy to use could increase the engagement of patients and communities and could complement research efforts to improve health outcomes.

Both patient groups and researchers highlighted the clear need for more data on the total cost of care.

FOCUS ON THE PERSON AS A WHOLE

The input received from workshop participants made it clear that limiting the focus to the patient limits not only thinking about the data but also the outcomes and impacts that matter to people in general.

This page intentionally left blank.